A Pharmacist’s Oath: ‘The Relief of Suffering’

By Carol Levy

The words “First do no harm” are actually not in the Hippocratic Oath, at least not directly:

"I will follow that system of regimen which, according to my ability and judgment, I consider for the benefit of my patients, and abstain from whatever is deleterious and mischievous."

But the meaning is clear: Do no harm to patients.

I expect that from doctors, although many of us have been disappointed by their adherence to the Hippocratic Oath. What never occurred to me was that pharmacists also have an oath, which includes these pledges:

“I promise to devote myself to a lifetime of service to others through the profession of pharmacy. In fulfilling this vow: I will consider the welfare of humanity and relief of suffering my primary concerns.

“I will apply my knowledge, experience, and skills to the best of my ability to assure optimal outcomes for all patients. I will respect and protect all personal and health information entrusted to me.”  

The DEA has given pharmacists the freedom to ignore their oath, and has coerced some pharmacy chains into handing over our personal health information without a warrant.

Every time a pharmacist refuses to fill a prescription, questions why you need a medication, or asks personal questions, they are not using the “Oath of a Pharmacist.” They are instead exercising a “corresponding responsibility” under DEA regulations, which requires them to make sure a prescription for opioids and other controlled substances is valid and needed.

As far as the DEA is concerned, pharmacists have the same legal obligation as a physician to ensure that a medication has a “legitimate medical purpose.”   

The DEA essentially allows pharmacists to substitute their opinion for that of the doctor, even if it runs counter to their pledge about “the relief of suffering.” Refusing to dispense opioid medication to a pain patient who is dependent on them basically ensures suffering.

I can see some pharmacists saying, “Well, I think that opioids are dangerous. Not filling the prescription is absolutely for the welfare of the patient.”

That argument sounds legitimate. But is it?

The pharmacist has not examined the patient. He/she does not know their medical history or the effect on them when their pain goes untreated. They haven't seen the patient’s x-rays, imaging, and other tests that confirm an injury or disorder that’s causing their pain.

Pharmacists may see us as their “patient" but we are really their customers. They have a product that we want. We come to them with the legally required paperwork to make a purchase. If they have the medication, there should be no issue. They should hand it over and we should pay for it.

If you know little or nothing about a customer, where do you get the right to decide what medication they can get? That decision should be left to our doctors, not to pharmacists or the DEA. 

Those of us in chronic pain have a desperate need for doctors we can trust.  The next step is pharmacists we can trust. Pharmacists who honor their oath to relieve suffering. Not pharmacists who are so fearful of the DEA that they think their best option is to ensure our suffering.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here. 

The Pain Scale is a Pain, but Doctors Ignore Alternatives

By Crystal Lindell

When I first started having debilitating rib pain more than 10 years ago, doctors would constantly ask me to rate my pain on a scale of 1-10. 

It was the worst pain I had ever experienced, but I didn’t want to sound too dramatic, so I would almost always tell them an 8 or a 9. 

However, I started to notice a troubling pattern: No matter what number I said, the doctors still treated me with the same mostly dismissive attitude. 

So, regardless of whether I said my pain was a 7, a 3, or even an 11, the doctors I was dealing with did not seem to believe me. They seemed to think I was being dramatic no matter what. 

At the time, I blamed myself. Surely I must not be communicating the severity of my pain well, if these doctors are still ignoring me, I thought. 

So I started scrounging around online for alternatives. I assumed that if I just explained myself better, then they would react with the urgency that I felt the situation called for.  

I also thought that perhaps I was picking the wrong number, which was causing doctors to dismiss me as someone who couldn’t accurately assess my own body. 

The first thing I found was a pain scale written out, where each number was explained, like this one from “My Health Alberta.” 

It includes a written description with each number, starting with:

0 = No pain.

1 = Pain is very mild, barely noticeable. Most of the time you don't think about it.

2 = Minor pain. It's annoying. You may have sharp pain now and then.

3 = Noticeable pain. It may distract you, but you can get used to it.

And so on. 

Looking at that chart, I decided that my new rib pain – which was eventually diagnosed as intercostal neuralgia that was caused by Ehlers-Danlos Syndrome – was a: “8 = Very strong pain. It's hard to do anything at all.”

The fact that I would often just lay on the exam table silently crying while I prayed that whatever doctor I was in front of would actually help me, made me feel pretty confident in my assessment of an “8.”. 

It was, indeed, very strong pain that made hard to do anything at all. 

I was also naive enough to believe that if I personally added the descriptor when I gave my number, that it would serve as some sort of magic spell that would finally unlock access to the treatment I needed. 

Alas, that did not work. Doctors just nodded and typed “8” into their little online chart and then moved on through the appointment the same way that they always had: With their trademark unsympathetic arrogance and suggestions about taking more gabapentin.  

After that, I went a step further: I tried to find a pain scale that felt more relevant. Eventually, I discovered the Quality of Life Scale, (QOLS). It’s designed for chronic pain patients to show how their pain is impacting their daily life.  

It's a reverse of the traditional pain scale, in that 0 is the worst pain, while 10 means you're doing pretty well. 

It features descriptions like: 

0: Stay in bed all day. Feel hopeless and helpless about life. 

1: Stay in bed at least half the day. Have no contact with the outside world. 

All the way up to:

10: Go to work/volunteer each day. Normal daily activities each day. Have a social life outside of work. Take an active part in family life. 

At the time, I was about a 4: Do simple chores around the house, minimal activities outside the home two days a week. 

Although those "activities" were just doctor's appointments, I was technically leaving my house every few days.

Looking back, I truly believed that using the QOLS scale with my doctors would be the breakthrough moment for my relationship with them. I remember printing it off and putting it in my healthcare binder full of hope that they would finally understand how bad things were for me. 

Alas, I was mistaken. 

Before I started having chronic pain, I was working a full-time job and a part-time one, and living independently. But my pain had gone untreated for so long that I had cut back on everything possible in my life. I shifted my full-time job to a work-from-home position, quit my part-time job, gave up my apartment, and moved in with family, who lived 2 hours away. 

I still remember thinking that when I told the two doctors I was seeing regularly about how I needed to quit my job and move in with my mom, that they would FINALLY see how severe my pain had been. Afterall, these were the real-life implications of where I was on the QOLS pain scale! 

Wrong again. Instead, both doctors just expressed quiet relief that I was moving out of the area, and thus I’d no longer be their problem! 

Thankfully, when I moved, I did find a new doctor who did take my pain seriously. And although it took some time to get the pain treatment situation under control, it’s been relatively well managed for years now. 

What I have come to realize about the pain scale is that most of the time, it’s not so much an assessment tool as it is a way for patients to feel a false sense of agency over their medical situation.

It’s like a little breadcrumb that doctors give patients to make them feel included in their own healthcare. 

Because in practice, doctors don’t give much weight to whatever number you say your pain is at. Instead, they rely on their own visual and sometimes physical assessment to determine how much pain they think you are in. 

This can be especially problematic for patients from oppressed or marginalized groups, because doctors are less likely to take their pain seriously in general. 

It’s also a huge problem for patients with chronic pain. That’s because when you live with pain every single day, you don’t react to a 10 on the pain scale the same way someone with acute pain would. It’s just not possible to live everyday screaming at the top of your lungs, or performing whatever stereotypical action doctors assume that someone with “real” pain would exhibit. 

For example, one of the things I learned quickly is that I needed to keep myself as calm as possible during a pain flare, because the more stressed and anxious I got, the more it elevated my pain. 

However, a 10 on the pain scale is still just as horrific, even if you’ve been at a 10 for months at a time. And it should elicit the same sense of urgency that would be customary for someone in acute pain saying that their pain was at a 10. 

In fact, I’d go so far as to argue that a 10 for a chronic pain patient can be even more harmful, because if you’re dealing with that level of pain for a long time, it will likely destroy your life. 

Unfortunately, most doctors can’t grasp any of this. So if you show up to an emergency room with an eerie sense of calm while trying to tell them that your pain is a 10/10, they are likely to be very skeptical. 

I wish I could end this column with some sort of solution for patients, but sadly, I don’t think I have one. If your doctor isn’t taking your pain seriously, they probably won’t change their approach just because you show them a different version of a pain scale. 

No, the solution to the frustrating experience of the pain scale will have to come from the other side: from doctors. 

My suggestion is that they start by just believing all patients and then responding accordingly. Unfortunately, under our current healthcare system, I don’t see that happening any time soon.

So all I’ve got for now, is all I’ve ever got: My hope for you that you’re not in too much pain today. 

What Do Tariffs and the War On Pain Patients Have in Common? Fentanyl-Phobia

By Crystal Lindell

Did you know that there’s a drug that kills 480,000 people in the United States annually? Based on years of headlines, you might assume that the drug in question is fentanyl, but you’d be wrong. It’s actually tobacco.

There’s another drug that kills 178,000 people in the United States annually. It's called alcohol. 

Meanwhile, illicit fentanyl, the street drug everyone loves to be scared of, was involved in the deaths of 73,654 people in 2022.

Any death is too many, but those statistics highlight how disproportionately we focus on fentanyl as the deadly drug we should fear most. 

For years now, overdoses involving fentanyl have been used to justify denying pain patients access to much safer prescription opioids, such as hydrocodone. Now it’s also being used as an excuse for new tariffs against Canada, Mexico and China, which went into effect this week. 

During his speech Tuesday night, President Donald Trump justified the tariffs by saying: “They’ve allowed fentanyl to come into our country at levels never seen before, killing hundreds of thousands of our citizens and many very young, beautiful people, destroying families. Nobody has ever seen anything like it.”

The situation shows how many aspects of our daily lives are impacted by the War on Drugs, whether it’s a doctor’s visit or economic policy. It also highlights just how much the war is used to justify whatever economic, healthcare, and law enforcement policies our government wants at any given time. 

Because, of course, if any of this was actually about saving lives, then we would be focusing on the drugs that kill more people than fentanyl: alcohol and tobacco. Those are both still sold over the counter though. 

Instead, our leaders lean on whipping up a moral panic about fentanyl. The end result is the same, whether that moral panic is used against patients or neighboring countries: it causes unnecessary pain and suffering. 

The headline on an NBC News article calls out the fact that the tariffs probably won’t reduce fentanyl deaths: “Trump says tariffs were enacted to curb fentanyl, but U.S. overdose deaths are already declining.”

The article also points out that nearly all confiscated fentanyl is seized at the US-Mexican border. In the current fiscal year, just 10 pounds of fentanyl have been recovered at the Canadian border, compared to 5,400 pounds at the Mexican border.

Canadian Prime Minister Justin Trudeau is under no illusion that fentanyl deaths are the real reason for the tariffs. MarketWatch reported that Trudeau called Trump’s rationale for using tariffs to stop the miniscule amount of fentanyl coming from Canada "completely bogus." 

"We have to fall back on the one thing he has said repeatedly – that what he wants is to see a total collapse of the Canadian economy, because that will make it easier to annex us," Trudeau said. "We are, of course, open to starting negotiations, (but) let us not fool ourselves about what he seems to be wanting."

Stepping back a bit, it’s important to note that the fentanyl bogeyman is just the latest facet of the War on Drugs, which the United States has been fighting and losing since 1971. The tariffs highlight how little the so-called war has ever been based on actually helping anyone. 

It would be wise to be skeptical anytime the War on Drugs is used as a justification for government policy. Just because a government claims something is the reason for a law or policy, that does not mean that that is the actual reason. That applies to tariffs, as well as limiting opioid pain medication. 

Skepticism should be applied to all drug-related policy in the United States. 

Documentary Looks at Plight of Children with Ehlers-Danlos Syndrome

By Madora Pennington

What would you do if your child were in pain? Not just in pain, but in screaming agony, day in and day out? If your child could no longer function?

The documentary "Complicated" follows four families who have a child with Ehlers-Danlos Syndrome (EDS), a rare genetic disorder that causes collagen and other body tissue to be fragile. EDS, named after the two doctors who first identified its peculiar symptoms, impacts those who have it in wildly different ways.

Collagen makes up a third of the body’s protein and is the glue that holds tissue together. To have defective collagen that stretches when it should hold firm can cause almost any part of the body to malfunction.

Over a century after its discovery, EDS is still poorly understood. There are no treatments to remedy the collagen defect itself. Patients and providers are often left groping for solutions for the damage flawed collagen wreaks.

If you have EDS like I do, you already know that what you are told to do to get better depends on the opinions of the specialists you happen to see. Don’t be surprised if they contradict each other, recommend treatments that have no studies behind them, have no understanding or experience with EDS at all, or recommend what is most lucrative for them.

As we see in Complicated, adolescence can be a particularly fraught time for the EDS child. As the body grows, the weight and stresses of longer, heavier limbs can overload the joints.  A growing EDS child may suddenly blow up in pain in places that used to be fine. Former activities can be impossible.

For reasons not well understood, the changing hormones of puberty can provoke a downturn in functioning, with issues like profound fatigue, GI problems, dizziness, allergic reactions, and so on.

Kids who become unable to eat get misdiagnosed with eating disorders. Kids too fatigued to get out of bed get labeled with depression, avoidance, or malingering. These kids are very sick in very strange ways that don’t happen to people with normal collagen.

Failed Surgeries

Spoiler alert and trigger warning for Complicated: two of the teenagers with hypermobile Ehlers-Danlos Syndrome (one of 13 varieties of EDS) tragically succumb in early adulthood. Both underwent extensive spine repairs in their teenage years.

These invasive treatments not only didn’t work, but lead to dangerous complications like loose and infected hardware implanted in their spines that, in the end, could not be repaired and destroyed all quality of life. Unfortunately, the documentary’s audience is left in the dark about how these families came to select these surgeries.

A study from 2012 warned against such surgery, concluding that half the EDS patients experience complications, despite a conservative surgical approach. “The surgeon choosing to operate on EDS patients must do so with extreme caution,” researchers warned.

Another horrifying outcome that Complicated does explore is how EDS families can be accused of medical child abuse (MCA). Also called Munchausen syndrome by proxy, MCA occurs when a parent or caregiver falsifies or exaggerates symptoms in their child and demands treatment that turns out to be harmful. Families with rare, poorly understood and very difficult conditions like EDS can go to extraordinary lengths to seek relief for their child’s suffering.

Andrea Dunlop, host of the podcast “Nobody Should Believe Me” and author of "The Mother Next Door: Medicine, Deception, and Munchausen by Proxy," explains how parents can fall into this trap.

“Munchausen is not seeking a second opinion or even hamming it up a little bit to make sure the doctor takes you seriously. It is a pattern of deliberate and often extremely well-researched deception perpetrated for the intrinsic reward of sympathy, attention, and — to a degree — the sheer thrill of fooling people,” Dunlop wrote.

MCA is diagnosed through medical records. If the records show parents claiming diagnoses for which there is no evidence, diagnoses never actually given by a doctor, or a caregiver’s demand for escalating interventions that pose great risk, those are red flags that something more sinister may be happening.

Complicated leaves out the specifics of how these families ended up under the microscope for MCA. It ends with one family’s joyous reunion and return to a place they love: Disneyland.

For this child, the family complied with child protective services and the courts by stopping excessive medical interventions. For all the EDS cases the documentary looks into, this child fared the best.

Madora Pennington is the author of the blog LessFlexible.com about her life with Ehlers-Danlos Syndrome. She graduated from UC Berkeley with minors in Journalism and Disability Studies.  

Chronic Pain Is Chronically Expensive

By Crystal Lindell 

My fiancé and I both have chronic pain. Which means we both spend a lot of money trying to manage it. 

Later today, he will drive an hour and a half each way to see his pain doctor so that they can drug test him in person.  He’s the only doctor in the region who will take new pain patients, so he’s the doctor my fiancé goes to, despite the long drive.

The doctor doesn't take my fiancé’s insurance though, so he will have to pay for the appointment the same way he pays for every monthly appointment with this doctor: with $160 cash. 

And when he gets his medication refill in a few days, that will also have to be paid for with cash at the pharmacy, because his insurance won’t cover prescriptions from doctors who don’t take the insurance. So that’s another $53. 

Aside from the direct costs of that whole ordeal, there’s also the in-direct costs like gas in the car, time away from being able to work on our (very) small online business, and the energy he’ll have to spend dealing with the drive and the stress. 

While he doesn’t have to see this doctor in-person every month, he does have to pay the full price for the appointment every 30 days, along with the prescription. So we have to find a way to basically pay for the equivalent of a car payment every month just so he can have the pain medication he needs to function. 

It’s just one of the ways living with chronic pain gets expensive fast, and also stays expensive. 

There’s the obvious stuff people think of, like the cost of both of us seeing doctors and filling prescriptions. But there’s also the less obvious stuff, like the regular purchases of bulk ibuprofen, Excedrin, and of course antacids for the heartburn caused by the other medications. 

And then there’s the more expensive stuff like the closet full of orthopedic braces, crutches, and walking aids.

There's also the $100/month we spend on kratom powder, which is the only over-the-counter substance that actually helps either of us when our very limited supply of prescription pain meds aren’t enough. And with the current swing in temperatures here in northern Illinois, there are a LOT of days when our limited pain meds aren’t enough. 

We also buy Gatorade every week to take the kratom with, because we’ve found it’s the best and cheapest option to use to get the dirt-like powder down. 

It all adds up so fast, especially with seemingly unlimited inflation. And it ends up being money that we can’t use to improve our lives in other ways, like building savings, having a wedding, or paying off debt. 

Speaking of debt, there’s also the added aspect of all the medical debt I’ve racked up over the last decade, despite having insurance for most of that time. It has essentially destroyed my credit, making it that much harder to secure housing and transportation. 

From the outside, it’s easy to assume that our money troubles must be caused by either our inherent laziness or our inability to budget correctly. But when you have health issues, your money is not the same. It is both harder to get and harder to keep. 

All of these costs are non-negotiable. We can’t just skip his doctor appointment because we have unexpected car problems to pay for. We can’t go without kratom as a trade off if we have unexpected veterinary bills for one of our cats. 

There are a lot of ways that society could be set up differently to help people with chronic pain and chronic illness. Things like universal health care, universal basic income, and expanded public transportation options would go a long way.

I would hope the fact that I’m a human being makes me worthy of social supports like that, but if that’s not enough, there are plenty of selfish reasons for other people to support expanded government programs.

While you may assume that because you don’t need some of these support systems yet, then you never will, you’d be wise to reconsider. Because that’s the thing about chronic illness: If you live long enough, eventually you’ll get sick too. 

And when you do, you’ll find out just how chronically expensive chronic illness really is.

Social Security Was Boosted by Covid Deaths, But at What Cost?

By Crystal Lindell

Three years ago, on Feb. 24, 2022, I woke up at 3 am to use the bathroom, and realized I had double-digit missed text messages and voice mails – all of them filled with words like “urgent” and “immediately.”

I called my brother and he gave me the news. Overnight, our dad, David Jeffery Lindell, had died.

He had been fighting a bad COVID infection for three weeks and was hospitalized multiple times. But then he was sent home, where he had a heart attack. Paramedics tried to save his life, but my dad died hours later at the local hospital, just before midnight. 

He was 67 years old, and because he had been battling chronic physical and mental health problems for decades, he had long been declared permanently disabled by the federal government.

So, like millions of Americans who died of COVID over the last few years, my dad was on Social Security.

Now, a new report from the National Bureau of Economic Research reveals a dark twist to the pandemic: So many people died of COVID between 2020 and 2023, that it increased the Social Security Trust Fund by $205 billion.  

CRYSTAL AT AGE 3 WITH HER FATHER

Well, more specifically, the 1.7 million “excess deaths” during those years saved the fund about $294 billion. Many of those deaths were working people, which resulted in less future payroll tax contributions and more payments to surviving loved ones. Factoring that in resulted in a net increase in the fund of $205 billion. 

The most heartbreaking revelation from the report though is that $205 billion isn’t a lot of money when it comes to Social Security. According to a Marketplace article about the report, the $205 billion in savings “won’t change much in the long term; the government pays that amount in benefits every couple of months."

In other words, all those human lives lost, and it’s barely even a blip when it comes to the federal government’s finances. 

It’s easy to forget that economic reports like this are talking about real, human lives. And that those human lives touched many other lives around them. My dad’s death was like a meteor hitting our whole family, and three years later, we are only just now starting to find solid ground again. 

A lot of the framing and discourse about this new report makes it sound like the government should be happy about the financial savings. But, as a country, now would be a good time to remember that human life has value in and of itself.

My dad mattered and would still be alive today, if not for COVID. He lived at poverty levels on his monthly Social Security benefits. His death, and the deaths of millions of others who were either on social security or set to receive it, should never be framed as a “good thing” by bean counters simply because it saved our government a miniscule amount of money.  

And to be clear, it wasn’t just people currently on Social Security who “boosted” the fund. People like my long-time friend Bronson Peshlaki, who had diabetes and died of COVID in 2020 at just 44 years old, will never collect on the Social Security payments he made his entire working life. Yes, that means his death was a cost-benefit for the U.S. government, but it was also a detrimental loss to the world. 

It can feel easy to dismiss the lives of the disabled, the elderly, the mentally ill – especially as their deaths are framed as some sort of economic boost for the rest of us.

But as someone with a disability, my life has value in this world. My dad’s life also had value, and so did my friend Bronson’s life. Now, as the U.S. healthcare system faces the possibility of more severe cuts and harmful policies under the Trump administration, it’s even more urgent that we remember that.

Every time the government lets a deadly disease spread a little more or cuts back on Medicaid, real people, with souls, will die. Regardless of how much money those deaths might save us, the cost is too high.

Trump Healthcare Policies Follow Project 2025 Playbook

By Stephanie Armour, KFF Health News

Few voters likely expected President Donald Trump in the first weeks of his administration to slash billions of dollars from the nation’s premier federal cancer research agency.

But funding cuts to the National Institutes of Health were presaged in Project 2025’s “Mandate for Leadership,” a conservative plan for governing that Trump said he knew nothing about during his campaign. Now, his administration has embraced it.

The 922-page playbook compiled by the Heritage Foundation, a conservative research group in Washington, says “the NIH monopoly on directing research should be broken” and calls for capping payments to universities and their hospitals to “help reduce federal taxpayer subsidization of leftist agendas.”

Universities, now slated to face sweeping cuts in agency grants that cover these overhead costs, say the policy will destroy ongoing and future biomedical science. A federal judge temporarily halted the cuts to medical research on Feb. 10 after they drew legal challenges from medical institutions and 22 states.

‘I Have No Idea What Project 2025 Is’

The rapid-fire adoption of many of Project 2025’s objectives indicates that Trump acolytes — many of its contributors were veterans of his first term, and some have joined his second administration — have for years quietly laid the groundwork to disrupt the national health system. That runs counter to Trump’s insistence on the campaign trail, after Democrats made Project 2025 a potent attack line, that he was ignorant of the document.

“I have no idea what Project 2025 is,” Trump said Oct. 31 at a rally in Albuquerque, New Mexico, one of many times he disclaimed any knowledge of the plan. “I’ve never read it, and I never will.”

But because his administration is hewing to the Heritage Foundation-compiled playbook so closely, opposition groups and some state Democratic leaders say they’re able to act swiftly to counter Trump’s moves in court.

They’re now preparing for Trump to act on Project 2025 recommendations for some of the nation’s largest and most important health programs, including Medicaid and Medicare, and for federal health agencies.

“There has been a lot of planning on the litigation side to challenge the executive orders and other early actions from a lot of different organizations,” said Noah Bookbinder, president of Citizens for Responsibility and Ethics in Washington, a watchdog group. “Project 2025 allowed for some preparation.”

The plan, for example, calls for state flexibility to impose premiums for some beneficiaries, work requirements, and lifetime caps or time limits on Medicaid coverage for some enrollees in the program for low-income and disabled Americans, which could lead to a surge in the number of uninsured after the Biden administration vastly expanded the program’s coverage.

“These proposals don’t directly alter eligibility for Medicaid or the benefits provided, but the ultimate effect would be fewer people with health coverage,” said Larry Levitt, executive vice president for health policy at KFF, a health information nonprofit that includes KFF Health News. “When you erect barriers to people enrolling in Medicaid, like premiums or documenting work status, you end up rationing coverage by complexity and ability to pay.”

Congressional Republicans are contemplating a budget plan that could result in hundreds of billions of dollars being trimmed from Medicaid over 10 years.

Project 2025 called for expanding access to health plans that don’t comply with the Affordable Care Act’s strongest consumer protections. That may lead to more choice and lower monthly premiums for buyers, but unwitting consumers may face potentially massive out-of-pocket costs for care the plans won’t cover.

And Project 2025 called for halting Medicaid funding to Planned Parenthood affiliates. The organization, an important health care provider for women across the country, gets roughly $700 million annually from Medicaid and other government programs, based on its 2022-23 report. Abortion made up about 4% of services the organization provided to patients, the report says.

The administration’s steps to scrub words such as “equity” from federal documents, erase transgender identifiers, and curtail international medical aid — all part of the Project 2025 wish list — have already had sweeping ramifications, hobbling access to health care and eviscerating international programs that aim to prevent disease and improve maternal health outcomes.

Under a memorandum issued in January, for example, Trump reinstated and expanded a ban on federal funds to global organizations that provide legal information on abortions.

Studies have found that the ban, known as the “global gag rule” or “Mexico City Policy,” has stripped millions of dollars away from foreign aid groups that didn’t abide by it. It’s also had a chilling effect: In Zambia, one group removed information in brochures on contraception, and in Turkey, some providers stopped talking with patients about menstrual regulation as a form of family planning.

Project 2025 called on the next president to reinstate the gag rule, saying it “should be drafted broadly to apply to all foreign assistance.”

Trump also signed an executive order rolling back transgender rights by banning federal funds for transition-related care for people under age 19. An order he signed also directed the federal government to recognize only two sexes, male and female, and use the term “sex” instead of “gender.”

The Project 2025 document calls for deleting the term “gender identity” from federal rules, regulations, and grants and for unwinding policies and procedures that its authors say are used to advance a “radical redefinition of sex.” In addition, it states that Department of Health and Human Services programs should “protect children’s minds and bodies.”

“Radical actors inside and outside government are promoting harmful identity politics that replaces biological sex with subjective notions of ‘gender identity,’” the Project 2025 road map reads.

Data Disappears

As a result of Trump’s order on gender identity, health researchers say, the Centers for Disease Control and Prevention took down online information about transgender health and removed data on LGBTQ+ health. A federal judge on Feb. 11 ordered that much of the information be restored; the administration complied but added notices to some webpages labeling them “extremely inaccurate” and claiming they don’t “reflect biological reality.”

The CDC also delayed the release of information and findings on bird flu in the agency’s Morbidity and Mortality Weekly Report. Federal workers have said they were told to retract papers that contain words such as “nonbinary” or “transgender.” And some hospitals suspended gender-affirming care such as hormone therapy and puberty blockers for youths.

Advocacy groups say the orders discriminate and pose barriers to medically necessary care, and transgender children and their families have filed a number of court challenges.

Lawyers, advocates, and researchers say implementation of many of Project 2025’s health policy goals poses a threat.

“The playbook presents an antiscience, antidata, and antimedicine agenda,” according to a piece last year by Boston University researchers in JAMA.

The Project 2025 blueprint sets out goals to curb access to medication abortion, restructure public health agencies, and weaken protections against sex-based discrimination. It would have seniors enroll by default in Medicare Advantage plans run by commercial insurers, in essence privatizing the health program for older Americans. And it calls for eliminating coverage requirements for Affordable Care Act plans that people buy without federal subsidies, which, insurance experts say, risks leaving people underinsured.

“It’s the agenda of the Trump administration,” said Robert Weissman, a co-president of Public Citizen, a progressive consumer rights advocacy group. “It’s to minimize access to care under the guise of strict work requirements in Medicaid, privatizing Medicare, and rolling back consumer protections and subsidies in the Affordable Care Act.”

The White House didn’t respond to a message seeking comment. Conservatives have said implementation of the project’s proposals would curb waste and fraud in federal health programs and free health systems from the clutches of a radical “woke” agenda.

“Americans are tired of their government being used against them,” Paul Dans, a lawyer and former director of Project 2025, said last year in a statement. “The administrative state is, at best, completely out of touch with the American people and, at worst, is weaponized against them.”

Dans did not return messages seeking comment for this article.

The Heritage Foundation has sought to separate itself and Project 2025 from Trump’s executive orders and other initiatives on health.

“This isn’t about our recommendations in Project 2025 – something we’ve been doing for more than 40 years. This is about President Trump delivering on his promises to make America safer, stronger, and better than ever before, and he and his team deserve the credit,” Ellen Keenan, a spokesperson for Heritage, said in a statement.

Versions of the document have been produced roughly every four years since the 1980s and have influenced other GOP presidents. Former President Ronald Reagan adopted about two-thirds of the recommendations from an earlier Heritage guide, the group says.

In some instances, the Trump administration hasn’t just followed Project 2025’s proposals but has gone beyond them.

The document called on the next president to scale back and “deradicalize” the U.S. Agency for International Development, an independent federal agency that provides foreign aid and assistance, including for many international health programs.

The administration hasn’t just scaled back USAID. Trump adviser Elon Musk bragged on his social media platform, X, that his “Department of Government Efficiency” fed the agency “into the wood chipper,” physically closing its offices and putting nearly all its staff on administrative leave while ending funding for its programs and disseminating misinformation about them.

But the administration risks waning public support if it adopts the project’s goals to upend U.S. health care and health policy. Almost 60% of voters said they felt negatively about Project 2025 in a September poll by NBC News.

“Project 2025 was never a thought exercise; it was always a blueprint,” said Ally Boguhn, a spokesperson for Reproductive Freedom for All, an abortion rights group. “We’re only a few weeks into his presidency, and it’s setting the groundwork for even more.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues. It would like to speak with current and former personnel from the Department of Health and Human Services or its component agencies who believe the public should understand the impact of what’s happening within the federal health bureaucracy. Please message KFF Health News on Signal at (415) 519-8778 or get in touch here.

Experts Divided About Benefits and Harms of Opioid Tapering

By Crystal Lindell

The first time I tried to do a full taper to go off morphine – after having been on it for years – I got hit with days-long withdrawal symptoms. Restless legs, diarrhea, cold sweats, extreme anxiety, insomnia, and more. It was horrible. 

So I called my doctor and asked for advice. He was not helpful, to say the least. He basically said that none of his other patients had ever had any withdrawal symptoms from morphine, so he didn’t know what to tell me. The implication was that this was a “me” problem. 

Looking back, I’m pretty sure that his other patients had just never told him about their withdrawal symptoms, so he assumed that they didn’t have any. That’s when I first realized that doctors were not a great resource for how to taper patients off opioids. 

A new study in the journal Pain Practice confirms many of my suspicions. It explored the  attitudes of healthcare professionals about the benefits and harms of maintaining, tapering or discontinuing long-term opioid therapy. 

The researchers analyzed the opinions of 28 “opioid safety experts.” Of those, 19 were prescribing physicians, while the rest were psychologists, researchers, or healthcare administrators. 

What they found is that there is little consistent advice or help from the “experts” about tapering. If you asked one medical professional for their opinion, you may get a completely different answer from another one. 

For example, over a third of the participants (36%) believe that long-term opioid therapy should be continued, while an equal percentage think opioids should be discontinued. 

More than half (57%) believe that patients can be harmed by tapering and/or discontinuation. But 18% think tapering to a lower dose is not harmful, and 29% think patients won’t be harmed by discontinuation. There were also quite a few “experts” who were neutral on the issue.   

Some recommended slow tapers (even when a prior taper was unsuccessful) and some advocated switching patients to buprenorphine, an opioid sometimes used to treat pain but is more widely used to treat opioid use disorder.

Some would try switching patients to non-opioid pain medications and therapies (even if they were unhelpful in the past), while others favor shared decision-making with patients to give them a role in deciding treatment.

Interestingly, few of the experts said they would assess patients for opioid use disorder or overdose risk.

The bottom line is that there’s little consensus about the right treatment path for patients on long-term opioids. The researchers said medical guidelines that might address these issues “may be difficult to utilize,” leaving doctors on their own to make decisions about professional liability, changing opioid regulations, patient preferences and treatment.

“In the meantime, individual care decisions that involve weighing relative harms should draw on longstanding norms of ethical medical care that call for informed consent and patient-provider conversations grounded in mutual respect,” the authors write.

I’m glad to see them specifically mention "mutual respect” between patients and providers, because there’s an obvious answer to many of these questions: Talk to patients and then believe them. 

I can guarantee you that I, as a longtime pain patient, would have more practical advice about tapering and withdrawal than many doctors or medical experts. There’s a certain amount of insight and empathy that comes from firsthand experience with withdrawal. 

I do give credit to co-author Kurt Kroenke, MD, of the Regenstrief Institute, for warning in a press release that taking patients off opioids “may result in return or worsening of chronic pain, mental health issues, drug seeking and potentially overdose and death.” 

Kroenke also notes that opioids help patients have a family life, hold a job, participate in social activities, and improve their quality of life. 

Indeed, that’s exactly the point: Opioids do help patients in a variety of ways. And in many cases, they are the only effective pain treatment. 

My hope is that future studies like this will include more direct input from patients about their experiences. If researchers really want to figure out the best guidelines for when and how to taper successfully, they should reach out to long-term opioid patients. 

Next time, instead of talking to 28 “experts,” researchers should talk to 28 patients.

Gretchen’s Journey Into Chronic Pain and Death

By Maria Higginbotham

I write this on behalf of one of my dearest friends, Gretchen Lont, a fellow pain warrior whose spirit I cherished deeply. I made a promise to her to ensure her pain story is told. Gretchen’s last hope was that by sharing her experience, we might alleviate the needless suffering of others grappling with untreated or undertreated pain.

We call ourselves pain warriors, having fought tirelessly since 2016 for the rights of those struggling with painful conditions to receive adequate pain treatment. According to the CDC, over 24% of U.S. adults — 60 million people — suffer from chronic pain, surpassing the combined numbers of Americans afflicted by heart disease, diabetes, and cancer.

Tragically, Gretchen passed away on January 19, 2025 at the age of 59, after enduring years of unbearable undertreated pain. Despite persistent pleas to her doctors, Gretchen’s words fell on deaf ears. Just days before her death, she received a devastating diagnosis: ALS, also known as Lou Gehrig’s Disease.

This story in no way reflects all the beauty and individuality that was Gretchen. It defines her struggles with untreated pain, but there was an entire life in which she lived and loved. Her children and her family were her world.

I only ask that you respect her family’s privacy during this difficult time. She was a bright light that will never be erased from our hearts. I am heartbroken at the loss of a beautiful soul and dear friend.

Before her disability, Gretchen lived life vibrantly. She adored her three sons — Zach, Jordan and Nathan — and cherished every moment with her family, including her father John, her sisters Stacy and Kristen, and brother Michael.

She worked tirelessly to provide for her children and always carved out time for joy and laughter. She lived life to the fullest.

GRETCHEN LONT IN 2019

Gretchen embodied the belief that giving is a greater blessing than receiving. Her generosity knew no bounds, and her radiant smile could light up any room. With a feisty spirit, she was a fierce protector of her loved ones. She found solace in crafting — painting and making jewelry — each piece a testament to her incredible talent.

Animals had a special place in her heart. Gretchen’s social media was filled with adorable animal pictures. She often fed the squirrels and birds in her yard and adopted a special needs cat named Cleo saying, “We’re two damaged bodies just trying to survive, and we’ll do it together.”

Gretchen's journey into pain began with an accident at an upscale restaurant in Tacoma, WA. A spill that had gone uncleaned caused her to slip and fall, resulting in a severe back injury which later required surgery. This injury ushered in years of excruciating pain, followed by joint pain, more surgeries, and a possible diagnosis of Rheumatoid Arthritis at the age of 57.

Desperate for relief, Gretchen explored every alternative pain treatment available, yet none eased her suffering. Living with chronic pain is akin to living with a chronic illness: you feel invisible. On the outside, you might appear fine, but inside your body is screaming in agony.

Eventually, she found a compassionate pain management doctor who, for many years, treated her as an individual. With the help of opioid pain medication, she managed to regain a semblance of life — spending time with her family, painting and crafting, celebrating holidays, and enjoying the beauty of nature. Her passion for art blossomed, allowing her to create stunning jewelry and amazing paintings.

A Wasteland for Pain Patients

Sadly, Gretchen’s doctor, after years of facing scrutiny from medical agencies, decided to retire, joining many other physicians who closed their doors due to the hostile environment surrounding pain management. In 2021, she gave her patients a year’s notice about her plans, in the hope it would be enough time to find new care.

Unfortunately, the state of Washington proved to be a wasteland for chronic pain patients. Most physicians here are unwilling to take on new patients who are on opioid therapy, and those who do will often refuse to continue the opioids and force the patients to try previously failed methods.

Gretchen’s only option was to have an invasive surgery for a pain pump. To qualify, she had to undergo extensive psychological and physical evaluations, which she passed. However, she was then told she had to reduce her opioid dosage by 75%. This drastic cut left her bedridden, trapped in a cycle of agonizing pain.

After months of suffering, the pain specialist told her that her insurance, Medicaid, would not cover the cost of the pain pump or surgery. In desperation, Gretchen asked if her opioid medication could be increased to a dose that would provide some relief from the agonizing pain. Unfortunately, she only received a minimal increase, leaving her to continue suffering in unbearable agony.

On October 3, 2023, Gretchen felt a deep despair settle over her. Bedridden and in relentless pain, she questioned why a person should be forced to suffer this way. There was always a battle to fight -- like finding a doctor willing to provide adequate pain treatment, dealing with pharmacists who were choosing whether or not to fill a valid prescription for medication, and insurance companies not covering prescribed pain treatment.

She felt like a burden, unable to spend time with her family or do any of the things that brought pleasure in life. The pain specialist seemed indifferent to her deteriorating condition. Gretchen made the heartbreaking decision to take all her medications in an attempt to end her suffering. Fear gripped her and she confided in her son, who immediately called 911.

Resuscitated through CPR, the ER team noted that this tragic episode could have been avoided had her pain been managed appropriately. They had seen this happen many times. Gretchen was discharged with the recommendation to consult her pain specialist about increasing her medication.

The following day, during a virtual visit, her pain specialist expressed sympathy and promised to improve her pain management. Yet, hope quickly faded the next day at an in-person meeting. The doctor declined to increase her dosage, and Gretchen continued her downward spiral.

A friend referred her to a new doctor who specialized in both primary care and pain management. This physician was willing to help, but insisted on a cautious approach. They tried various medications, which provided minimal relief, but Gretchen’s health continued to decline.

The years of untreated pain had caused irreparable damage. She was losing 5-8 pounds weekly, struggled with swallowing, and faced increasingly severe breathing difficulties. She was a mere shadow of the vibrant person she had been two years prior.

A New Diagnosis

By late December 2024, Gretchen's breathing worsened, leading her doctor to recommend a visit to the Emergency Department at UW Medical Center for treatment of suspected pneumonia and a neurology consult.

That’s when Gretchen was diagnosed with ALS and learned that the suffering she endured for so many years stemmed from that incurable, painful, and deadly disease.

gretchen 3 days before she passed

It should be known that chronic pain patients often go decades struggling with intractable pain without a definitive diagnosis. Like Gretchen, many of us are diagnosed with a rare disease or medical condition when it’s too late to do anything. 

Admitted to the hospital on January 1, 2025, Gretchen was discharged to home hospice on January 17. Just an hour after returning home, she suffered a coughing fit and anxiety attack. Gretchen had realized she was dying.

I happened to call her at that moment and the only 2 words I could make out were “hospice” and “dying.” She was immediately sent to a nearby hospital, her body frozen in fear; her eyes and mouth wide open, arms outstretched. She stayed like that for just over 24 hours before she stopped breathing.

Long before she passed, Gretchen shared these words with me:

“Please help patients like me who have no options. We did not choose to have medical conditions that cause pain. No doctors will take you if you’re a chronic pain patient. It’s devastating to be in such a vulnerable position and feel abandoned. Our medical system is supposed to provide us with compassionate care and treat us as unique individuals. Instead, pain patients have become pariahs.

I share my story because I want those in power to understand that we are not just individuals suffering in pain. We are family members with loved ones who care for us and have loved ones that we care for. We deserve to live our lives filled with laughter and joy, not confined to a bed, incapacitated, and suffering in agonizing pain. There is an easy answer: treat our pain!

Please stop punishing those who suffer in pain. Our lives matter.”

Gretchen has her angel wings now, flying free from pain — a bright light in our lives whose flame will never be extinguished

Maria Higginbotham is a patient advocate and chronic pain sufferer who has an aggressive form of degenerative disc disease. Multiple surgeries not only failed to relieve her pain, but left her with adhesive arachnoiditis, a chronic inflammation of spinal nerves. Maria has also been diagnosed with Ehlers-Danlos disease and Scleroderma.

Physicians and Pharmacists Fear the DEA. Should Patients Sympathize?

By Crystal Lindell

Many doctors and pharmacists are scared about giving patients opioid pain medication because they are worried about getting in trouble. 

They worry about facing consequences from the Drug Enforcement Administration or about breaking local laws and in-house policies. That could mean losing their license, going to prison, or being reprimanded.  

The question is, how much sympathy should this elicit from patients? How understanding should we be of their plight?

Because if you ask doctors and pharmacists, they think the potential consequences should elicit mountains of sympathy – to the point that patients should be able to completely ignore their own physical pain.. 

Whenever I interact with healthcare professionals online or in real life, they will often quickly cite these hypothetical consequences as their reason for limiting opioid prescriptions or administering none at all.

And make no mistake, they are definitely limiting opioid prescriptions. As someone who’s helped many family members navigate the healthcare system, I’ve seen first-hand doctors refusing to prescribe opioids for chronic pain, acute pain, post-op pain, cancer pain, and even hospice pain. 

Meanwhile, even if patients get a prescription, pharmacists seem to do everything possible to avoid filling it. They claim your insurance won’t cover it, that they ran out of your medication, or that they can’t find the prescription that your doctor sent over. 

Doctors and pharmacists will justify these excuses with something along the lines of “I could lose my license! I could be arrested! I could face fines!”

It’s not just my anecdotal evidence though. A study looked at how a 2018 West Virginia law limiting initial doses of opioid medication to a 4-day supply impacted physician attitudes toward opioids. 

In a series of interviews with primary care providers, researchers found that the law “exacerbated the pre-existing fear of disciplinary action and led many prescribers to further curtail opioid prescriptions.”

As one participant, a male primary care physician with 14 years of practice, said:

“[It] really started to scare a lot…of providers into feeling that it wasn't worth the risk to continue to prescribe for fear of being labeled as an over-prescriber or being outside of the norm or, you know, the potential liability that goes along with it.“ 

“Liability.” That’s the key word in that quote. They are worried about themselves. 

The researchers said many providers “felt that taking on patients who legitimately required opioids could jeopardize their career.”

“Their career.” Again, it’s about them.

It’s as though doctors and pharmacists are expecting people in pain to nod their heads sympathetically and respond with something along the lines of: “Oh wow! I didn’t realize how difficult this was for you! But now that you’ve explained your hypothetical consequences, I’ll just go ahead and endure my debilitating pain that’s making me suicidal! Sorry I have burdened you! I sincerely apologize!”

It’s also especially interesting to me that the researchers noted that many of the patients they were talking about "legitimately required opioids.” So it’s not like doctors have some delusion that all these patients they are refusing to treat are "illegitimately" looking for pain meds. 

Medical need is apparently irrelevant when a doctor or pharmacist may get in trouble. 

So I have to tell you, as a patient, I feel about as much sympathy for them as they feel for the patients that they are denying care to – which is to say, almost none. 

The most obvious problem with their reasoning is that these doctors and pharmacists are always citing the potential consequences that they could face when it comes to opioids, while ignoring the very real harm they are causing their patients. 

Make no mistake, they are definitely causing very real and immediate harm to patients when they refuse to treat their pain. People with untreated pain actually do lose their careers, because their pain makes it impossible to hold a job. And when pain patients are forced onto the black market to find relief, they risk losing their lives or their freedom if they get arrested. 

Not to mention the fact that prescription opioids do more than just make the patient feel a little better. They can help patients rest when their bodies need that rest to heal. And they can help patients get through needed treatments like physical therapy. 

This isn’t just a problem for pain patients though. The speed at which doctors and pharmacists have made it clear that they will forgo medical reasoning in favor of “just following orders” should concern all of us.

When doctors start to act as police, we are all in trouble.

RIP Melissa Brooks: ‘It Starts with Pain and It Ends with Pain’

By Ann Marie Gaudon

Melissa Brooks wanted me to tell her story once she was dead. She wanted others in pain to know her experience in trying to access medically assisted death in Canada.

Melissa was in pain -- severe, intractable pain -- and if she met the criteria for Canada’s Medical Assistance in Dying (MAID) program, she’d be able to end her life with dignity and mercy.  Melissa suffered from multiple chronic conditions, was mostly wheelchair bound, and legally blind. Euthanasia is what she desired, but applying for MAID wasn’t easy.

“It starts with pain and it ends with pain. And there’s a bunch of medical system mess-ups in the middle,” Melissa told me.

Melissa was free with her words, so honest and articulate. She had different personas she’d use to tell people about her desire for death, because if she shared how deep her misery was, Melissa thought she’d lose friends. On the days she couldn’t hide her pain, she didn’t interact with people and expressed to me that this was a lonely place to be. Melissa felt that no one knew what she was going through.

“The quickest way to lose friends is to be honest about how much pain you’re in,” she said.

Curiously, once she requested MAID, Melissa felt a newness in her relationships. Her friends now knew they had a limited time to grieve and they no longer had to carry the “nitty gritty” of her for an extended time.

Most of our conversations happened as Melissa went through the strict process that MAID requires for medical assistance in dying to be granted.

I wrote a column about the many difficulties my friend Maggie Bristow had accessing MAID to end her life, after nearly three decades with chronic pain.

Melissa’s struggles with MAID were different. This intrigued me – what is going on here?  Why isn’t there a standard protocol? You meet the criteria and then you are approved. But that’s not what happened.

You need two doctors to assess your application for MAID. Melissa's first assessor pissed her off by repeatedly saying her medical condition was “complicated.”

Of course it was – all MAID cases are complicated.

MELISSA BROOKS AND HER SERVICE DOG, RUBY

“I’m complicated, my case is complicated, my pain is complicated. I think it’s medical BS and I almost fell for it, like I was asking for too much,” Melissa said. “I didn’t feel that complicated until these people were telling me that I was. I have been suffering for decades, my quality-of-life sucks, and I don’t want to do this anymore.”

‘A Moral Dilemma’

In 2016, Canada’s Parliament passed legislation that allows eligible adults to request medical assistance in dying. However, a person’s death had to be “reasonably foreseeable.” This was challenged and Parliament amended the legislation in 2020 to create the current two-track system.

MAID still requires a “grievous and irremediable medical condition,” but a reasonably foreseeable natural death is no longer necessary. If you’re likely to die soon, you’re on track one. If you aren’t and you still want an assisted death, you’re on track two.

With my friend Maggie Bristow, nothing was that simple. It took years for her request to be approved.

Melissa also went through struggles with MAID, with her first assessor questioning her mental well-being. The problem for them was that Melissa was not mentally ill.  The first assessor, not having found any reason to deny Melissa’s request except for her own conscience, did eventually say yes. But that did not come without a price.

“When the first assessor called me well after 8pm – when she knows that is not a good time for me -- she called to assassinate my character,” Melissa said. “She was so mean and made the process so much worse. She accused me of lying and yelled at me over the phone, ‘You’ve put me in a moral dilemma!’”

Poor Melissa was so upset. We talked about how this truly had nothing to do with her and that this particular assessor should not be working for MAID. Not all assessors are equipped to deal with life and death decisions.

This first assessor was so enraged and upset that she told Melissa she would next be seeing “the cream of the crop” assessor -- the one who teaches the others. It was bad news from the beginning, as his treatment was also less than desirable. He sent a psychiatrist to Melissa’s home to assess her mental health. 

The psychiatrist made it a point to tell Melissa that he preferred to begin with a clean slate and never searched or looked up anyone’s history before meeting them. That was a blatant lie. Melissa was an abuse survivor, but that was not the reason she was seeking MAID. The psychiatrist asked questions that only someone who had done a deep dive into her medical history would be asking.

It was all so fake, and Melissa fired this second assessor and his psychiatrist. She was back to having one yes.

‘Killed Me With Kindness’

Next came the third assessor and Melissa was hopeful. She seemed open and progressive. She told Melissa she identified as queer (I’m not sure why or how that would have mattered), but she was kind and that was an improvement.

The process of requesting and receiving MAID should take 90 days. Melissa’s case was taking much longer. In terrible pain and desperate, Melissa tried to take her own life. It did not work, but landed her in the psychiatric ward of her local hospital. I believe this is what sealed her fate with the oh-so-nice third assessor.

“(She) killed me with kindness after not even spending an hour with me, just to tell me she would be saying no,” Melissa said. Now Melissa was in limbo. She had a “yay” and a “nay” from two assessors.

That made Melissa even more frustrated. She met MAID’s criteria of being over age 18 and having an “irrevocable and grievous medical diagnosis” that could not be cured or treated.

“MAID’s job is not to fix the patient,” she told me. “Their job is to say, ‘Yes, they met the criteria’ and to move forward, not ‘This is icky because they’re young and they don’t look like they have a terrible life. They don’t look like they’re suffering or that they want to die.’”

Now Melissa had no help, no guidance, no nothing. She wanted to put in a complaint. But to whom?

A few miserable weeks later, she did get something. It seemed to begin as a urinary tract infection (UTI), which could be quite dangerous for Melissa as she was so physically vulnerable to begin with. Then she started to cough. I asked her if she would call her practitioner for treatment and she agreed, but I saw the writing on the wall.  Her doctor said she had a UTI, plus pneumonia, but agreed with Melissa that this could be treated from home.

You may have already figured out what came next. Melissa did not take the antibiotics she was prescribed, and stopped eating and drinking. She had a “Do Not Resuscitate” order from before she even applied for MAID. Can you blame her? I sure didn’t.

On January 30, while I was working, I had a voicemail message from Melissa telling me that she was going to begin palliative sedation that night and to say a gracious goodbye. She left her friend’s number to call should I need anything.

Melissa Brooks died on January 31, 2025. You might think for a moment that is what she wanted, but it is not. In the end, MAID was an epic fail for her. She wanted to die at home, perhaps with a friend like me, and for sure with her beloved service dog.

I am so sorry Melissa that everyone failed you. My hope is that you somehow find peace in the afterlife. You were one-of-a-kind and I shall never forget you. Blessings.

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management.  She has been a chronic pain patient for over 30 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website.   

The Best Advice I Got From My Therapist About Chronic Pain

By Crystal Lindell

I started having chronic pain at 29 years old, and the speed at which it upended my life left me with what felt like body-wide whiplash. 

I developed intercostal neuralgia seemingly overnight, which resulted in daily chronic pain in my ribs. 

At the time, I was working two jobs, maintaining an over-active social life, and living on almost no sleep. It’s a lifestyle I tried to maintain well after my body was telling me to stop.  

My mindset had not caught up with the new reality of my body yet, and I paid the price: I kept ending up in either the emergency room or immediate care. My body now had limits, and I was doing my best to ignore them. 

Because the pain was so severe and made me feel so hopeless, around this time I also asked my primary care doctor for a referral to a psychologist. The pain was making me suicidal. I needed help. 

In one of the best gifts of fate, the psychologist I was paired with had a lot of experience in helping people navigate chronic illness. She very likely saved my life. 

The first appointment I went to, I spent the entire hour sobbing about my new reality. 

Eventually, after we started meeting every other week, I came out of the fog, and her advice and guidance were what helped me finally start to see clearly. 

While I’m grateful for her tips about things like keeping a daily gratitude journal, and techniques she shared about how to communicate to my boss and my loved ones about my limitations, there was one piece of advice that helped the most. 

My therapist taught me about activity pacing. 

It sounds so obvious now that I understand the concept, but after living the first 29 years of my life at full speed and only sleeping when I physically could not stay awake a second longer -- pacing was revolutionary for me. 

The Basics of Pacing

In short, pacing is basically approaching activity levels in a more intentional way -- not doing too much and not doing too little. It also means that you don’t wait to rest until you need to. Instead, you rest proactively. 

So, rather than staying awake for 24 hours straight trying to get everything done for my two jobs, I started to stay awake for a more manageable 14 hours and then sleep for 9 hours. After waking up, I learned to slowly ease myself back into activities. 

Because I grew up in a culture where I was constantly told that working well past my limits made me a better person, pacing felt almost illegal. Until my therapist explained it to me, it had literally never occurred to me before that I could rest proactively.  

Making sure I was getting enough sleep made a drastic difference in the severity of my physical pain, and it also helped give me mental clarity for dealing with the shock and challenges of my new body. 

However, it did take me a couple years to fully understand the foundational principle of pacing: It’s not just doing too much that’s a problem, it’s also doing too little. 

Yes, therapy helped me to stop pushing myself beyond my limit, but for about a year after that, I went to the other extreme. I was so scared of aggravating my pain, that I spent every day in the house, doing work from home, and then sleeping – with little else mixed in. 

Around this time I found out that my vitamin D levels were dangerously low – the lowest my doctor had ever seen in a patient. I think it was because I was getting almost no exposure to sunlight for days on end. 

So that is what spurred me to learn that balance goes both ways. I started to understand the importance of doing some activities sometimes, and resting other times, without eliminating either one.

Pacing has become the foundation of my life these days, more than 10 years after I first started having daily chronic pain. It’s a huge factor in keeping me both physically and mentally healthy. 

You don’t have to just take my word for all this though. A small 2021 study showed how helpful pacing can be. 

According to a “Very Well Health” article about the study, the researchers taught participants – who all had chronic health issues – the basics of pacing.

The pacing framework included:

• Recognizing current unhelpful behaviors

• Finding baselines

• Practicing self-compassion

• Being flexible

• Gradually progressing activities

The study found that the pacing results happened fast. Some of the patients who attended a rehabilitation center for issues related to chronic pain and fatigue experienced the benefits of pacing after just two sessions. 

The study also included quotes from the participants talking about how it impacted them. 

“Before going to the programme I was just stuck in a situation where I'd do what work I could when I could…and then suffered for it; and I didn't really think about it the same way as when it's explained to you,” one patient said. “So, whereas I thought I was pacing myself naturally, in a sense I wasn't.”

Indeed, that’s the magic of good therapy. It gives you a new perspective, and if you’re really lucky, it gives you tools that help you live a better life. 

I’m not here to tell you that pacing in our society is easy.. As I’ve said, it took me years to truly implement it into my life. And I still struggle with days when I over do it, or even rest too much. 

Overall though, as a foundational principal, pacing is the most important thing I do to manage my chronic pain. And I think if you try it too, you’ll find out first-hand just how helpful it can be.

A Pained Life: My Fantasy Trip to Nowhere

By Carol Levy

I'm watching TV. An ad comes on for a cruise to a tropical port. It looks so inviting.

At the store I overhear someone describing the “wonderful” trip they recently took to Europe, touring Paris and dining in a real Italian trattoria. Their joy in describing the trip is hard to miss.

For a minute, even two, my mind churns out fantasies of going on a trip of my own. Maybe a safari in Africa or a trip to France to see the Eiffel Tower and eat real French pastry. 

For a moment, my mind flies with the excitement of it, before crashing back to earth

In my mind I can take those trips. Because in my mind, in my fantasies and dreams, I have no pain. I'm just a regular normal person. Then the facts come rushing in, slamming me. What? You’re going to leave the pain behind?

I don't have this fantasy much anymore, after all these decades of living with pain. But, once in a while, I see myself without pain. I'm out in the world. I have a job again, making friends and socializing.

For a fleeting second, I even see myself -- not the old lady I am now -- but 26 again, before the pain started and ripped away any chance of being “normal.”

Then the final slap in the face: You're 72. Twenty-six is long gone, never to return.

So many articles are written abbot how to cope with pain without drugs: meditation, mindfulness, and relaxation techniques. They may work for some of us. And it's great when they do. But they don't work for me because my trigeminal neuralgia pain is not in my body, it’s only in my face.

It's frustrating when I read these articles, many in medical journals or on medical websites, because invariably they don't have relevance for many of us. The advice telling us to exercise more and to not “give in” to the pain, but to do what hurts in order to help our bodies realize we can move more and do more.

That doesn't help for cranial neuralgias, many of the people with CRPS, or the pain associated with lupus, multiple sclerosis and arachnoiditis. The suggestions are as frustrating to me as the ridiculous idea that I can go on a ship or a safari.

I want the pain to go away. I want to be a “normal” person who can do pretty much whatever I want, whenever I want. Even go on a trip. The pain always tells me: No, ain't gonna happen.

I keep waiting for the articles and doctors to finally say, “Here's what we can do to minimize your pain.” Stopping it entirely may be a step too far to hope for.

But please, medical community, stop with the cliches, especially ones that imply it is my fault that I have chronic pain. If I could exercise or think it away, I surely would.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here. 

6 Things to Try If Your Doctor Won’t Prescribe Opioid Pain Medication

By Crystal Lindell

Many doctors are extremely resistant to prescribing opioid pain medication for any reason these days. Whether it’s for post-operative pain, chronic pain or even pain from terminal cancer, patients are finding that doctors shrug their shoulders and tell them to go home and take ibuprofen.

Unfortunately, over-the-counter pain medication is just not effective in many cases, and that can leave patients in desperate situations. 

As someone who’s been navigating my own chronic illness for more than a decade, as well as helping my loved ones with their health issues, I do have some very realistic advice I can offer.

If you ever find yourself in extreme pain, but your doctor won’t give you pain medication, here are 6 things you can try. 

1. Doctors Expect You To Negotiate

Many doctors now have an unwritten policy where they will only give you opioid medication if you ask a certain number of times, especially when it comes to acute trauma like a broken bone or post-op pain. 

Doctors believe that this helps them to make sure that you really need it. 

So just because your doctor tells you no one time, two times or even three times, that doesn’t mean you should just accept the response. If your pain is severe enough that OTC medication is not working, then ask again. And again. Ideally, they eventually relent and will send in at least a small opioid prescription for you. 

This also helps future patients. Many doctors assume that if patients don’t ask repeatedly for pain medication after a surgery then that means that the surgery doesn’t result in severe pain for anyone. By showing them that you need it, you make it more likely for doctors to believe the next patient.  

2. Tell Your Doctor You’re Unable To Work Due to Pain

Unfortunately, under our current financial structures, much of our worth as humans is still tied to our ability to be productive at our jobs. So telling your doctor that you’re in too much pain to work may inspire them to finally send in an opioid prescription for you. 

They do not want you missing work, which could mean you losing health insurance and being unable to pay them. 

3. Threaten To Go to the ER

Another option when your doctor refuses to give you opioid medication is to tell them that you’re going to go to the emergency room then. This will often spur them to send in a prescription.to your pharmacy.

When it comes to something like post-surgical care, many doctors feel like it makes them look bad when their patients have to go to the ER for after-care. 

I have also seen this work for chronic pain as well, especially if you’re in their office when you bring it up. One time, for example, after explaining that I was going to go to the ER because my pain had spiked, my doctor gave me stronger pain medication in his office.

As an aside: Just make sure that if you get something very strong, like a hydromorphone shot, that you also get medication for nausea, like Zofran. While most ERs do this as a matter of policy, sometimes a doctor will skip it if it’s administered in their office. 

This is something I learned the hard way after an in-office hydromorphone shot left me vomiting for more than 24 hours because I wasn’t used to the strength of the medication. The whole thing could have been prevented with some Zofran.

4. Go to the Emergency Room

If telling your doctor that you want to go to the ER doesn’t motivate them to send in an opioid prescription, then the next step is to actually go to the emergency room. 

In my experience, ER doctors will, at the very least, usually give you a dose of pain medication to take on site. That can help you get the pain down to a level where you can at least think clearly and then figure out next steps and/or get some needed sleep. 

Depending on the situation, sometimes you can also convince ER doctors to give you a small prescription for at-home use too, especially if it’s for something like post-op pain or a severe injury.  

5. Consider a Pain Management Doctor 

If you have chronic pain, many times your best option is getting a referral to a doctor who specializes in pain management. 

This is not ideal because pain management doctors tend to be quite different from primary care doctors. That’s because many pain specialists believe they are being watched by the Drug Enforcement Administration. The DEA has no medical expertise, but has targeted hundreds of doctors for what it calls “unlawful” opioid prescribing.  

Because of that, many pain management doctors act more like probation officers than medical professionals, requiring invasive and expensive monitoring like drug tests and pill counts on a regular basis. This means the patient experience tends to be more like being on probation than getting healthcare. The only thing missing is an ankle monitor.

That said, pain specialists are usually willing to prescribe a low-dose opioid if it doesn’t exceed medical guidelines, which could get them in trouble. For many patients, even a low dose can literally be life saving. 

If you can’t get pain treatment anywhere else, then it can be worth it to put up with the draconian atmosphere. 

6. Try Kratom or Cannabis

The two most effective pain treatments you can get without a prescription are kratom and cannabis, although your mileage may vary and their legal status varies a lot by jurisdiction. 

While I am not sure how effective kratom or cannabis is at treating short-term intense pain, like a broken bone, I have personally found kratom to be the only substance I can get without a prescription that helps my chronic intercostal neuralgia pain. I would describe kratom as having an extremely mild opioid effect. 

Personally, I use it by taking a spoonful of kratom powder with a swig of Gatorade, as I find that to be the most effective delivery method. However, there are many options, ranging from capsules to kratom candy and even kratom seltzer. 

I also know many others who have found relief by using cannabis, which is thankfully legal in many places now. THC gummies seem to be especially helpful to anyone who’s new to cannabis use and doesn’t want to smoke. Cannabis dispensaries are also usually staffed with knowledgeable, friendly employees who are happy to guide you to the best option. 

I always say pain will make you crazy much faster than you expect. Within just three days of severe pain, I have seen people openly saying they were ready to die. 

It’s a true shame that in 2025, when effective and cheap pain medication exists, so many people are still left to suffer simply because of opioid-phobia and an overzealous DEA. 

However, that doesn’t mean you should be forced to suffer through pain just because you may not know how to navigate the healthcare system. You do have options. 

And if you’re in a situation where you’re denied pain care that you need, I hope you’ll use it to inspire more compassion in yourself. Pain treatment is a human right, and the more people who support it, the more likely we are to get it. 

Can Disabled People Be Political Activists?

By Crystal Lindell

The world feels very broken these days – politically, economically and socially. Many of us already deal with broken bodies. Can people with disabilities do anything to fix a broken world?

The short answer is: Yes. 

The longer answer is: Not just yes, but that we must.  

While it can feel overwhelming to get involved in politics, even when you’re at peak health, there are a lot of ways you can fight back if you have chronic pain or other health issues that limit your capabilities.

Disabled people, including the chronically ill, bring a special expertise to political movements. For decades, we’ve been dealing with governments that often do not care about us. 

That apathy was made especially apparent when the 2016 CDC opioid guideline was released. Our concerns about the guideline were ignored and many pain patients were subsequently abandoned by doctors and the healthcare system.

But it’s even deeper than that. 

Disabled people learned first-hand that government regulators and our for-profit healthcare system do not actually care about anyone’s health. We were left largely on our own to fight off COVID. Not to mention how little the government does to make sure disabled people have access to basic necessities, as they make applying for government benefits nearly impossible. 

Now though, oppression is moving outward. Groups that were traditionally more protected from horrible governmental policies are also noticing how bad things have gotten, because it’s starting to affect them directly. 

What can disabled people do about any of this? Shouldn’t we just focus on our own lives for now? 

That would be a mistake. In fact, it is right now, when things are changing so rapidly, that it is most important for us to pay attention and advocate for better conditions for ourselves and others. 

The first step there is seeking out reliable news sources. In our current political climate, staying informed is, in itself, an act of resistance. While I understand the urge to check out of political news, it’s important to remember that it’s those who have information who have power. 

This is made especially clear by the fact that people in power work diligently to limit our access to accurate information through censorship, distraction and propaganda. 

Seeking and gathering accurate information is one way to fight back. Sharing it is also important. Communication is one of the foundations of political activism. 

This column is an example. I’ve been advocating for pain patients for more than a decade. While I haven’t personally changed any legislative policy that I know of, I do know that I’ve had an impact on people’s lives – which is what political activism is all about. I have helped people cope with life under our draconian drug laws and crumbling healthcare system. Many readers have reached out to tell me as such.

Giving people practical tips for living day-to-day can go a long way toward saving lives. And telling them how you’ve coped with adversity yourself can be extremely important. 

In our wellness-focused society, where health is often seen as a moral virtue, it can feel shameful to tell people about your health problems. But, in my experience, sharing our stories can be exactly the kind of thing other people need to hear.

If you can’t physically attend a protest march due to health reasons, that doesn’t mean you can’t be politically active. You can still donate to non-profits and advocacy organizations. If you’re not in a position to donate, you can help amplify their messages by sending emails, writing letters, sharing stories online, or even just talking to someone – all at little to no cost. 

Personally, I have found it to be really important to dive in and help locally. I volunteer at a local cat shelter every week, but it doesn’t have to be something that formal. I also cook meals for my elderly grandmother, my mom and their caretaker, because I know it helps lift a burden for them. 

Maybe you’ll find that you enjoy baking for a neighbor in need or checking on an elderly relative more regularly. 

When we help others, we really help ourselves. Human souls yearn to be in service to others Our desire to serve and our inevitable need to eventually be served are what stitches all of us together on the planet. 

Now is not the time to zone out and give up. Despite the physical battles many of us fight daily, we can fight back politically. More than that, we must.